On Being Fat, Disabled, and Adapting to Life

I’ve been fat for most of my almost 61 years of life (from the time I was 22). Up until about 20 years ago, the only problems I really had were finding clothing that fit (that I liked), and putting up with the fat-phobic comments from my family. For some reason, I really haven’t gotten much of the hate and fat-phobia thrown my way as some other fat women have. Now, this may be because, as a woman who is 5’8” tall and weighs 350 lbs. (well, that 350 was before the weight loss surgery (WLS), it’s 400 lbs. now), and goes around with a perpetually pissed-off look on her face, I just might be considered a tad intimidating. And that pissed-off look is my normal face, if I’m not smiling or laughing. It’s not something I’ve been able to change, although I have tried. So I just go with it, and am glad of the fact that it makes me look intimidating enough that people generally leave me alone.

The clothing wasn’t really a big problem for me – I’ve been sewing since I was 10 years old, and worked in three different garment factories, making a variety of clothing items for women and men. I learned a lot of shortcuts that way, and applied them to my sewing at home so I could make more clothes in less time and have a wider variety of items from which to choose.

But about 20 years ago, all of that began to change for me. Well, actually, the change in my abilities started right after I quit one of my jobs – I worked in a drug store, and unloading the truck every Thursday, tossing 25 to 50 lb. totes of merchandise, and stacking cases of gallon jugs of water killed my back (this was in 1987). I had arthritis in my knees and couldn’t lift from a squatting position, so ended up bending over and lifting with my back – not a good thing to do.

Then there was the standing at the cash register all day long on concrete floors. I would get into my car at the end of an eight-hour shift, and by the time I drove the two miles to my house, my back had cramped up so badly that it took me a few minutes to be able to get out of the car. If I sat down when I got home, when I had to get up for any reason, the soles of my feet burned like I was walking on coals. This also happened when I first got out of bed for the day, the burning went away after an hour or so. The cramping in my back got to the point that any time I had to stand for any length of time, it cramped up and my legs would start to get numb. I could get some relief if I bent over and leaned on something (like the counter next to the cash register at work – not a good look for an employee). I ended up having to quit that job and file for disability.

In 1993, I moved from Illinois to Minnesota, and in 1997, I had WLS that failed spectacularly to make me thinner (I lost 80 lbs. and eventually gained it all back, plus another 40 lbs.). I managed to be able to work at various jobs after the WLS – most of them were jobs that required I be seated, so back/knee problems weren’t an issue.

But my mobility issues were getting worse. I had been able to go to the mall to shop, and manage to walk the whole time without having to sit down more than once or twice during the whole trip (a couple of hours). Then it got to the point that a trip like that required sitting down three or four times, and then it just got to be too much of a hassle to shop at a mall at all, and I was reduced to shopping in stores that had mobility carts. I could still handle walking from the car to the store, and from the store to the car, but if I had to do that walking and walk through the entire store (Cub’s, Sam’s, Walmart, etc.), I would have ended up on the floor from cramped back muscles and numb legs.

Added into all of the back/knee, intestinal, fibro, and migraine issues was the fact that if I sat or stood for too long, my legs swelled and the swelling didn’t go down unless I laid down. It took five years of seeing various doctors before it was diagnosed as venous insufficiency, and that it was probably another of the complications from that lovely, failed WLS.

That ruled out a sit-down job, as that aggravated the swelling, as did a stand-up job. I ended up applying for disability again – was denied, appealed, and was approved. As much as it pains me to say this, I’ve not been able to work now for almost eight years, and I hate it. If I weren’t married, what I get in Social Security Disability Insurance would not allow me to live as well as I do, nor would it have allowed me to make the adaptions to my daily life that I’ve had to make in order to continue doing everything that needs to be done when you have a house, a husband, and pets (we have two cats). I’ve learned that if something makes my life easier, and less painful, I’m going to do that and I’m not going to care much what other people think of me.

In addition to the arthritis in my knees, I now have it in my spine (along with spinal stenosis of one vertebra), and both hips (the right hip joint is bone-on-bone). This makes it extremely painful to walk for any distance at all – I can manage in the house as I have furniture to lean on if necessary, but it makes life very difficult if I want to go anywhere. I looked into having Medicare and TriCare buy a mobility chair/scooter for me when I got to the point that my Rollator was no longer enough help (even with the seat, I was limited as to how far I could walk, how much I could do, and how long my energy would last). Unfortunately, if you don’t require the use of a wheelchair/electric mobility chair/scooter to navigate your home – you’re shit out of luck because Medicare and other insurances won’t pay for it (you need to be able to navigate your house, but I guess you don’t need to be able to navigate the outside world as long as you can navigate in your house without a chair/scooter).

Luckily, I have a wonderful husband who told me to go online and research power chairs/scooters and see what they cost. After much discussion, we bought a Pride Maxima mobility scooter (it has a 450 lb. weight limit). At first, we used ramps to load it into my minivan, but I wasn’t much help, and trying to push 180 lbs., even if it’s on wheels, was more than DH could manage. So back online for more research about hydraulic lifts – one that would fit my minivan and the scooter. We found one, had it installed, and we both agree that it was the best money we ever spent (well, next to what we spent on the scooter). It allows me to get out and about by myself – I can unload and load the scooter alone (although DH does it if he’s with me). And the scooter allows me to go places now that were just too much walking, or too much walking/sitting, before.

As for how I’ve adapted my life to getting things done at home, here’s the rundown:

I have a folding chair on the enclosed back porch that I use to sit on when I’m cleaning the cat box (bending over while standing now kills my back). I also use it to put groceries into the fridge and freezer (standing that long kills my back, my hips, and my knees).

I use my husband’s wheeled desk chair to sit on while I sweep and mop the kitchen floor. We have a stick vac for “sweeping” and then I run the Swiffer WetJet to mop it. I use my wheeled desk chair to sit in while I vacuum the rest of the house (the first floor anyway, DH does the basement and the second floor). I also use the desk chair to sit in and move from bookshelf to bookshelf to do the dusting.

We don’t have a kitchen table/chairs anymore – we have bar stools to sit on at the kitchen counter when we eat. I use one of those bar stools to sit on when I’m cooking or doing dishes. DH puts the dishes away when they’ve dried, so I don’t have to worry about dropping anything (my right hand is all tingly, not really numb, just tingly and weak).

I have a shower chair in the bathroom that I use when I clean in there. DH cleans the shower because it’s too big for me to do when I’m sitting down (it’s 34” deep and 5′ long by 7′ high).

I also have a laptop so that when I’ve been sitting too long at the sewing table or at my computer desk, I can sit in my recliner, elevate my legs, and get online with the laptop. I know, I could watch television instead, but even with cable TV, there just isn’t that much on that I want to watch (and I’m getting really tired of seeing all the weight loss commercials — I end up yelling at the TV, which freaks out the cats).

Last but definitely not least, a friend helped me move my sewing table, notions and tools, and sewing machine from the second floor to the first floor. My sewing table is now sitting 3′ behind my computer desk so I can sew any time I want to just by turning my chair around and moving over a couple of feet (my sewing table is 6′ long and 2½ feet deep). I’ve already done more sewing in the last two weeks than I have in the last two years, simply because I don’t have to climb a set of steep, narrow stairs anymore (and I don’t have to come down them on my butt so I don’t risk falling down them).

All my life, I’ve heard how lazy I am because I’m always looking for a faster, easier way to do any work I have to do. I prefer to think of myself as inventive, adaptive, and efficient. Finding a faster, easier way to get work, any kind of work, done means I can do more work with the energy I have, and in my book, that’s a good thing. So it doesn’t matter if you’re thin and disabled, fat and disabled, or any size and disabled – you do things the way you have to do them in order to live the life you want, to have the energy to do the things you want to do, and to have the least amount of pain possible.

Gerald – I wear compression stockings from the time I get up until I go to bed, and they do help some. I have less trouble with swelling when the weather is cold, and when the humidity is low. But summertime with high heat and humidity make the swelling worse, and sometimes even elevating my legs doesn’t help. It’s just another one of the things with which I deal on a daily basis.

Vesta, this lovely article has come at a good time in my life, when my husband and myself have had to sit down and really think about our future as my chronic pain conditions increase while I age.

I have several autoimmune conditions plus a few injuries, and combined with developing osteoarthritis I am finding joint, muscle and nerve pain getting to the stage that it is difficult to maintain my part-time work.

We’ve looked into disability pension briefly but there is no way it would be considered at this stage, but as I’m sure a lot of people with chronic illness and disability would relate, it is very expensive to try and retain mobility and independence!

I love your creative solutions and it is time for me to knuckle down to developing my own and stop dreaming about an imaginary ‘recovery’. I manage my pain as best I can through various methods such as exercise and pacing but making those all-important adjustments would help enormously.

As for being fat while having these problems, well I’ve been accused, directly and indirectly, of laziness as well – including by doctors. I want to say to everybody, you try managing work, home, family and friends, appointments with seven different medical providers, daily exercise plus all my other activities, all through a haze of pain and brain fog – then we’ll talk laziness!

When I use my cane in public I’ve been laughed at, snarled at, had people ‘accidentally’ slam into me with shopping trolleys and my cane kicked out from under me. Fortunately as I get older (and developed my own ‘resting bitchface’) people don’t seem to want to harrass me as much.

It’s clear that to get to where you are it has taken courage, ingenuity, patience and hard hard work – not to mention your lovely husband. It is the invisible side of disability – everybody wants to see pretty young disabled people as ‘inspirational’ which in itself is dehumanising, but they can’t see the energy and time and stubbornness that goes into making your way through the world.

Anyway sorry about my long reply, but I loved every word of your article (and always adore your comments) and I want to say thank you, I feel among friends. It would be lovely to read your writing more! Len

Vesta44, thank you so much for writing this in so much detail! I’m adapting and adapting too – arthritis in my spine, wrecked knees, foot mangled in a botched surgery 30 years ago, and I do all my housework in rolling office chairs too! I would love to know more about the hydraulic lift to get the scooter in and out of the minivan.

I use canes for very short distances and a scooter (travelscoot) for longer ones. My house has an assortment of chairs in strategic places. Didn’t have WLS, thank goodness, but that was because the bunion surgery that ruined my left foot made me scared of it, so I guess something good came of that debacle.

Anyway, I struggle with the thought that I’m “lazy” although reading your account makes me see it very differently. Thank you so, so much for writing this.

rabbiadar – I researched online about hydraulic lifts for mobility scooters, and ended up getting one from the medical supply company where I bought my scooter. They installed it, and told me if I ever sell my minivan (I have a 2008 Kia Sedona), they can take the lift out and install it in whatever other minivan I buy. It’s installed in the very back of my minivan, where the third row of seats would be (mine fold into the floor, so the lift is installed over them). It has a platform that I drive the scooter onto, then it lifts the scooter up and slides back into the van. It also has straps that go from the framework at the back of the lift to the front side of the platform so that I can strap the scooter down to keep it from moving. It cost us a little over $3,000, but it was totally worth it. Pushing the scooter up and down ramps to get it into and out of the van was too difficult for me to do it alone, and I wasn’t much help to my husband when he had to load and unload the scooter. And having the lift gives me much more freedom to go places alone.
This is the link to the lift I got for my van: http://www.medcityweb.com/Catalog/Online-Catalog-Product/1291/Joey-Lift

I’m becoming more and more of a self-pay patient I can get what I need at the same cost or less than I’d be paying via insurance, only there’s one less party involved in my care. I also get it sooner because there’s no messing around with approvals, less paperwork, and I’m not seeing statements in my mailbox months after services were rendered. The only exception is lab work where either the lab hugely overbills or the insurance reimbursement rates are ridiculously low. I’m still looking for a good alternative there.

Thank you for sharing your story and your ingenious solutions. I really like some of these. I like the use of the rolling chairs for tasks, and I’m wondering where you found substantial, sturdy rolling chairs to use?

BryLane Home has a good selection of sturdy office chairs and sometimes you can find them on sale, or find a coupon online for money off. The one I’m currently using at my desk is not one I’ll be buying again. I got it from amazon.com and it’s cheaply made – both arms broke within 6 months of having it, the seat tilts forward all the time, and if I’m not careful to sit down exactly in the center of the seat, it rocks from side to side (I’ve almost fallen out of it a couple of times). I’m looking for another chair, but will have to wait a while before I can afford to buy one. This one still works, sorta kinda maybe, as long as I’m careful.